MY STORY WITH CERVICAL DYSTONIA
There must be rocks in my neck and shoulder I convey to the pain specialist, Dr. Hamid Fadavi.
Dr. Fadavi tells me he has reviewed my hospital CT and X-Rays of my neck and he does not believe I have arthritis.
The doctor also notes several blurry areas on my CT.
I ask if I do not have arthritis is the Relapsing Polychondritis the cause of my neck pain?
Also, can the inflammation from Relapsing Polychondritis causes the blurriness on my X-Rays?
Dr. Fadavi does not answer me immediately.
Instead, I find him looking intensely at my face, neck and then he asks me to stand against his office wall.
As I stand against the wall, Dr. Fadavi measures the distance of my shoulders and stance.
After Dr. Fadavi has my measurements he advises me to sit back in my chair.
Before I sit back in my seat, I anxiously rattle out my additional symptoms to Dr. Fadavi.
I proceed to tell him that it sounds crazy, but my face looks distorted.
I have noticed that my face is crooked.
Dr. Fadavi does not think my symptoms are crazy.
The doctor asks me for my driver's license.
I give Dr. Fadavi my driver's license and show him a video I sent to a friend a day earlier.
It is apparent in the video that my jawline is pulling and jerking involuntarily.
The doctor examines the trigger points in my body.
He asks me numerous questions. Is my neck pain better or worse in the morning?
I answer the pain is better in the morning. The pain increases as the day proceeds.
Dr. Fadavi tells me he believes I have Cervical Dystonia.
Oh, what is Cervical Dystonia?, I ask.
Dr. Fadavi patiently informs me about Cervical Dystonia and the Botox treatment plan for Cervical Dystonia.
I ask is there a lab test to confirm Cervical Dystonia? No, say Dr. Fadavi. You have to go by the patient's symptoms.
So, how bad are my Cervical Dystonia symptoms? Moderate, the doctor, replies.
Doctor Fadavi then ask me for my phone. He tells me he is going to take a couple of photo of my face and then compare the photos to after treatment.
The doctor shows me the pictures. My face does look crooked.
The photos show how muscles are pulling and spasming in my neck region.
I then ask, does the Botox treatment work?
Sometimes and the results vary, explains the doctor.
My hope for an instant cure has quickly diminished.
I then ask the doctor, what causes Cervical Dystonia?
The doctor answers, the medical community, is not sure what causes Cervical Dystonia.
Cervical Dystonia is a rare disease that usually occurs in middle age people, forties, fifties.
Ugh, Really?!, You can't make these stories up, screams inside my head.
My body already battles with the rare diseases of Sheehan's Syndrome, and Relapsing Polychondritis. I am not seeking another rare disease.
The kind-hearted doctor tells me to schedule with the front desk for Cervical Dystonia Botox treatment.
Hopefully, the Botox will stop my muscles from spasming.
Resources:
https://rarediseases.org/rare-diseases/cervical-dystonia/
http://www.mayoclinic.org/diseases-conditions/spasmodic-torticollis/home/ovc-20260698
http://www.botoxcervicaldystonia.com/